A question for the Cystic Fibrosis Community

What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?

Answers from the Community

Well, my CF clinic that is here in Denver, Colorado, National Jewish Health is extremely good. They have really helped me improve. They’ve been good at diagnosing some issues that I didn’t even know were affecting me, so that’s definitely the number one resource. Number two, I really like using Twitter to connect with other people that have CF. That’s been a huge support system for me. Also, the Colorado Medicaid Program here is really, really good. That has been a huge relief for me. I didn’t qualify for Medicaid in my old state is Missouri so this is just the game-changer. And then I used the CF Compass service to help me with some legal issues regarding unemployment and disability and healthcare. So that was very helpful also.

I have probably found…I’ve gotten involved with my local CF center’s patient advisory board. That’s a tool that I have used to help give input on the way our team interacts with patients. I have also joined some CF Facebook groups that have a supportive environment, and that’s been helpful over the years to develop friendships and enjoy just being able to talk to someone who has the same life experiences as I do.

Two tools that I found most useful are the Apple Health app in my phone, because I keep track of my meds on there and my test results I’ve connected to there and my step count and my mileage counts because it helps make sure I’m getting enough exercise for my condition. And also Vertex sends me emails and helps me communicate with one of their liaisons to help manage my condition and get all the information that I need to know about their company and their medications.

The Cystic Fibrosis Foundation webpage is very, very helpful. They give the latest updates in the CF community about therapies and new drugs that are in current development and different health information. They post so much information that’s helpful and beneficial on their website. Also, I would like to say that another resource is our Clinic. They’re always more than willing to help in any avenue that we may need. And the HealthWell Foundation has been another great help. They’ve helped us find grants for specific medications and things of that sort that insurance wouldn’t normally cover. Yeah, I think that’s about it as of right now.

The most useful tool is definitely the Internet. This did not exist when I was little; you’d have to go to a library, or talk to your doctor, or find a support group for parents with CF, or a support group for people with CF, had to find other people who had CF, because it’s not a very common illness. But with the Internet, it really allows you access to that community. There is the CF Foundation, there are groups on Facebook, there are message boards, you can Google any medication, you can Google any treatment, doctor, questions. I have found, without a doubt, hands down, the Internet, specifically Facebook, to be very beneficial. I have met friends through this network, through social network, I have met communities of people who are adults living with CF, people who are adults living with CF, who are on the same drugs as me, people who are adults living with CF who go to the same hospital as me. And through that I’ve found support, I’ve found resources, I’ve found a wealth of information. And that is really, totally beneficial, because without it, I don’t have access to these things, and it could prove very challenging if I want to take a new medication, what do I do? Well now, with the Internet, and social media, and all that, I can just type in my question: “My doctor said, ‘You’re eligible for Trikafta.’ I’m curious, what are the pros? What are the cons?” People who have taken it, people who are going to take it, and you get all these responses, all this information, and you can really weigh your options about your healthcare or your doctor. Like, “I’m going to this hospital,” or, “My doctor wants to send me to this specialist. Has anyone with CF been to this type of a specialist?” And you get all these people telling you experiences, and it really is very, very useful and helpful.

The most useful resource that I could use is my doctor’s office’s website to use to communicate with them about questions and scheduling appointments. Let’s see. Yeah, the doctor’s office, just like I said, it’s easy to make appointments or talk to them, get questions answered. That’s probably the most useful one, my doctor’s office, the doctor’s office’s website.

Definitely the cystic fibrosis foundation provides support. But I would also would say social media in general. Facebook has been a wonderful tool for finding other cystic fibrosis people that may be on the same journey and may not. We all share the same disease, even if we have different things going on in our life at the time and it’s been a wonderful tool because a lot of cystic fibrosis people because of the cross-infection issue, we can’t get together because some of us are too sick to get together, and so it’s been a wonderful tool to be able to find other people all over the country and all over the world that you can relate with.

I often use the resource and support of the Cystic Fibrosis Foundation’s website. I also use social media, such as Facebook, to converse with other moms going through the same thing.

The biggest tools that I use have always been my doctor and the CF Foundation through my doctor and care team, as they’re the ones that do come up with treatments and clinical trials. I use their website to follow the pipeline for trials that I had been previously enrolled in. I also do use some social media outlets. Those are good for keeping track of future treatments and trials, as well as news related to CF.

I think my number one app is my alarm clock. It reminds me to take my meds every day and do my treatments. Secondly, would be Instagram. I’ve met so many people with cystic fibrosis over Instagram who are positive and uplifting. A lot of the apps that are just geared towards cystic fibrosis are more of a who is sicker kind of place to be and a pity party, and that’s not who I am. So I kind of went out on Instagram and found my own friends and have become best friends with these people.

Definitely, the Cystic Fibrosis Foundation is one of the best resources. I feel like I can go to the website and find all kinds of information and updated clinical trials. I know what’s coming down the drug pipeline. I can find information on how to get better insurance, better things that can help pay for treatments for my child, just day to day life things that are helpful. So definitely, the CF Foundation and even the local office of the CF Foundation is very supportive, always checking on us, just making sure we have what we need, making sure we’re aware of all the resources that are out there. So that’s a big one. I realize some on the social media groups like CF Mamas, if I have a question, I can put the question out there and get tons of responses from other parents of kids with CF and what has worked for them. A lot of it is just life things. How do you store your medical equipment? What’s the best way to keep track of medicines taken and doctor’s appointments? And just things like that, that you don’t necessarily talk to your doctors about but it’s just day to day stuff. So you do have to sort through some of the radical things, as I mentioned before, some of the moms and dads who go overboard, I think, trying to protect their children. But I still feel like I get a lot of useful information about just day to day activities and maybe your doctor doesn’t respond right away to a question, you can say, “Hey, I’ve got this, my daughter cultured this in her throat culture, does anybody have this? What is this? What does it mean for you?” Or, “I’m going to the hospital with my child, what are some things I should take? What should I pack in a bag? What should I do to keep my child busy and not bored to death in the hospital?” Things like that, the social media sites have been really helpful in that regard.

I find the cystic fibrosis webpage the most helpful for me, because it has all the information in one place. It also shows the research and the clinical trials out there. So, it’s really just a consolidated database of everything that I might want to know.

Well, one of our main tools has been our CF team at our local hospital that we attend, accredited hospital, that we attend in Alabama. The social worker there has been a great resource for us. Some other tools have been the National Cystic Fibrosis Foundation. Their website offers lots of information and resources for us to use. One of the most helpful tools has been, honestly, other mothers, there is a website called CF Mamas and it’s on Facebook. And those ladies have been a wealth of knowledge for me to answer questions in regards to resources for monetary coverage for prescriptions, for doctor visits, for supplements that we have to have for weight gain. They are a wealth of knowledge and resources for me. The Vertex Foundation, because of the new medication that they offer, they have been the most helpful as far as helping us regulate insurance. We are assigned a caseworker and they take it from there. We do not have to argue with insurance. They get all of that done and lined up and then our medication is shipped directly to our home and that’s been one of the other helps is that we have a couple of pharmacies, mail orders, and they call and remind me monthly that a medication is due for a refill. They take care of that and have it shipped to the door so I don’t have to worry about that.

One of the resources that I do use pretty much daily, please excuse my dog, is the app on my phone which tracks my steps. That works really well because I like to stay active and keep up with how much I’m moving around. All the moving is good for my lungs. So probably that’s one of the biggest resources I’ve used. The CF Foundation has been really great about providing different informational tools. Also UNC, the CF clinic, is very beneficial to me providing information and keeping us up on the new things that are going on.

Thankfully the greatest resources are just my medical team, but also the community of other people living with the same condition. We’re able to share and learn a lot from one another. I don’t really use any apps or anything.